Month: December 2017

There is a lot of stigma against mental health. Labeled as crazy, people who have mental health issues suffer rejection by family, friends and co-workers. This is shocking, considering an estimated 1 out of 5 people will have mental health concerns in their lifetime. It should come as no surprise to you that those of us who have lost a baby or who struggle with infertility have much higher rates. Within a year of the death of their child, a full 50% of mothers were diagnosed with a mental illness, with about 30% being diagnosed with depression / post-partum depression or similar illness and another 20% with an anxiety disorder, such as post-traumatic stress disorder.[1] Similar results exist for childless women, who report having approximately 3 times the risk of depression or anxiety when compared to women who have never experienced infertility.[2] Considering that mental health issues are often under-diagnosed, the rates may be much higher.

I am a PTSD survivor. I used to struggle with nightmares and panic attacks. While most friends and co-workers were supportive and helpful, that was not always true. One former boss even yelled at me in the middle of my panic attack “What the hell is wrong with you? Can’t you even stand to be around pregnant people?” Ummm… no, I can’t. I had no choice but to recover from my PTSD. One of the common treatments for PTSD is gradual re-exposure, and working at the hospital where I gave birth, with the same doctors and nurses and going through two subsequent pregnancies meant getting up, going to work, walking those same halls. At first, it meant debilitating fear and elaborate avoidance techniques: to not go to the same floor, to not do anything that reminded me of the day my boys died. I still suffer from huge anxiety around pregnant women who are not members of the baby loss community. I still occasionally have nightmares that I am unable to keep my children alive. However, on the other hand, I no longer have sleepless nights. I actively try talking about my sons and love talking to other baby loss moms about their children. Even as I type this, the radio is playing Sibelius’ Finlandia, (Be Still My Soul) which we sang at my sons’ funeral, and I am smiling while thinking of them.

If you are in the depths of depression or an anxiety disorder, I write this to let you know there are treatments that work. It may be a long road to healing, but others have travelled it before. Please take charge of your health by ensuring your doctor knows what you need. There are effective treatments for depression, anxiety and PTSD and finding the right one for you is worth it.

It is the time of year when my Facebook ads and e-mail are bombarded with “weight loss tips”. Advertisers assume that because I am a woman of a certain age, I must be dissatisfied with my body. If only they knew….

As a woman who struggled through the death of my sons and infertility challenges, my body shows the changes of five pregnancies in five years. I gained 55 pounds with the twins and the stretch marks, scars and extra skin never went away. Especially while my second and third pregnancies failed, the tiger stripes were a constant reminder of my body’s failure to keep my babies alive. I didn’t hate my body because I didn’t look good in a bikini or because my skin was a little pudgier than before. I hated my body because I blamed it and myself for their death. Somehow, in some way, my body had let me down, let my sons down, when I needed it the most. I am a feminist. I firmly believe that my value as a person goes beyond my body, my looks and my ability to have children. Yet I still felt trapped by my thinking that I was worthless, or worth less, because I could not have a baby. Every morning as I got dressed I would stare at my tiger stripes, my twin skin, and loathe my body. I was a failure as a woman because I could not have a baby.

A new year is a time of new resolutions, which is why I am seeing all those ads for weight loss. Here are my body resolutions for the year:

1. My body does not represent who I am. I am greater than the sum of my parts.
2. My ability to bear children (or not!) does not give me worth as a person. I have value either way.
3. My body is not perfect and never will be. My tiger stripes and twin skin make me fierce and proud. I am a survivor. I can face any challenge. You can see it in my skin.
4. I will remind myself every day: My sons’ death was not my fault.

This was originally posted at Still Standing Magazine.

Susan Sontag wrote, “All photographs are memento mori. To take a photograph is to participate in another person’s mortality…all photographs testify to time’s relentless melt.” The phrase memento mori comes from the Latin to “remember death” and it commonly refers to postmortem photography, used frequently in the late 19^th and early 20^th century. My fellow contributor, Carly Marie’s recent experience on Facebook has got me thinking about our memento mori.

If you have not been following what happened, Carly Marie issued a challenge for the month of October called Capture Your Grief. Her plan was beautiful, issuing a daily challenge to take a photograph that expressed your grief or your healing process and post it to a Facebook page. I participated last year and loved it. On the second last day of the challenge, someone outside the baby loss community posted nasty comments on one of the included images, one of our memento mori, and it rapidly spread. I think we can all imagine the hurtful things that were said, often because we have heard them before. “Don’t show those pictures.” “That’s disgusting” “You’re sick”, etc. It is yet another reminder that some people do not want to acknowledge our children. They want us to hide them away and pretend they never existed.

So how did we get here? Why, in the early days of photography, did we take photos of our deceased? When did we stop, and why? How can people be so offended by simple images, most of which are tastefully done, not showing gore or disease? I decided to do a little research…

I found people have taken photographs, beautiful photographs, of the dead for as long as there have been cameras. They’ve done it in many cultures throughout history: in Russia, Iceland and Japan, in the UK, in communities of Hungarian immigrants in Ohio and among African Americans in Harlem, NY. Photos of the dead and dying are celebrated in the art and journalism worlds, as evidenced by many of the most famous Pulitzer Prize winning images. The 2006, 2007 and 2008 feature photography winners all were depictions of death, grieving and loss. Almost all the  breaking news photography winners are depictions of death as well, from images from the Haitian earthquake, to the aftermath of a bombing in Kabul. Many of us were not fortunate enough to have professional photos taken. Instead, we have blurry images, taken in haste by a shaky hand. Yet in each image I have seen, great care was taken to make our babies look their best. They were held lovingly, teddy bears or hats covering areas where the skin is starting to shed, and often retouched to appear less clinical. Perhaps that is a clue to people’s revulsion. Unlike the images in the news, where no attempt is made to make death ‘pretty’, our attempts to normalize the death of our children disturbs people. It is okay if we can pretend that death is something that happens to other people, but a photo of a mom holding her child, tears in her eyes, is too close to home. They see their own family photos, not that different from ours, and know that it could just as easily have been them.

Many critics of memento mori believe this is a practice from the past, when it was harder to obtain photographs of someone while they were still alive. This is not true either. Surveys in the late-20^th century of photographers, photo processers and funeral home directors all indicate that the practice never went away, although maybe people were less likely to display their photos publicly. For some reason, in the past few decades, we have stopped sharing our memento mori. Maybe now that taking photos with our phones has become easier, and sharing photos through Facebook, Instagram and other social media sites becomes common, we will return to a time where photos of the dead are no more unusual than photos of the living.

Amazingly, new research is showing that sharing our memories, like these photographs, can help us heal. A study in the UK of 160 women who had a stillborn baby showed that those who were happy with their opportunities to share memories had better mental health, even 10 years later. Talking and writing about our experiences, showing our pictures and hand and foot prints, having others acknowledge our loss makes it easier for us to process our grief. The study also found that only half the mothers shared their memories and mostly only within their immediate social circle. This is where the problem with Facebook lies. It is so easy for our memories to be shared beyond our immediate friends and family, to lose control over our own narrative.

How should we strike the balance between needing to share and protecting ourselves from harm? Do you get support in ‘real life’, or come online to find a safe space to talk about your children? Can we find a way to encourage those who are hostile to our babies to be more open?

This post first appeared on Still Standing Magazine.

After the boys died, I ordered copies of my medical records. I’m not entirely sure why. Partly because I wanted to see for myself what mistakes might have been made. Partly because I had been given Ativan. My memory of their birth was rather hazy. And partly because this record was one of the few tangible pieces of evidence of their existence and I wanted anything – anything! – that reminded me of that.

When the records arrived, I opened the envelope with some hesitation because I did not know exactly what I would find. When I looked at the nursing notes, my heart ached for what I saw. And not just because the nurses and social worker wrote down the details of their birth. All those things I could not hope to remember in my shock and medication-induced confusion. No, my heart ached because the nursing care notes were already stained with tears. Before I touched these pages someone I didn’t even know, cried for my boys and me. Maybe it was the nurse as she carefully documented my labour progress. Maybe it was the social worker as she read the pages before her consultation with us. It might have been the resident, or the attending physician or even the anaesthesiologist, who I remember was fighting back the tears as he explained the epidural procedure and apologized that there was only so much he could do to take away the pain. The tears might even have belonged to the pathologist and his resident, crying as they read the care notes during the autopsy in an attempt to find the answers, answers that were not there. I spent only 24 hours in hospital from arrival to discharge and during that time, my sons touched a lot of lives, each person having to document their interactions with me and with them in the medical record.

Perhaps it does not matter whose tears they were. They were proof that my sons’ lives mattered. That someone else cared deeply. For that, I am truly grateful and will forever remember that nurses grieve too.

Have you ever connected with your nurse, midwife, obstetrician or other health care provider since your loss? Are you a health care professional who grieves for the losses of your patients? What are your thoughts on this connection?

A great video on a nurse’s grief in stillbirth has been done by a nurse-researcher at York University. I got the idea for the title of this post from there.

This post first appeared on Still Standing Magazine.